Sunday, July 8, 2012
Being Fat - And Getting Healthy
Saturday, July 7, 2012
Attempting Suicide
I was at Sake Cafe tonight and an old memory was triggered when I was talking to my boyfriend, Matthew...I began thinking of years I spent growing up, and the abuse I suffered at the hands of my uncle. I remember when I attempted suicide....
I awoke to my uncle coming in my room and waking me..."It's time to get up..." he said sternly.
"Uncle Bob can you get me my pain medication on the dresser, please?"
My uncle replied, his voice got louder, "No! Get up! Get it yourself!"
"Uncle Bob, I hurt, could you please give me my pills?"
My uncle shouted, "Didn't you hear me? No! Get up and get it yourself!"
He left the room and I went back to sleep. I was in agony from endometriosis, which is a female condition triggered by heavy menstruation. I suffered with this since I was 11 years old. My whole family knew of my medical condition, but was unsympathetic. I suffered with a heavy flow, extreme cramps, bad back pain, and frequent periods.
I was asleep when my uncle came back in, this time he was infuriated with me!
"Didn't you hear me? I said get up"
"I can't...I hurt..." I said in a lowly voice...
"If you don't get up...I will make you get up!"
He stomped over to my bed, grabbed the mattress by the handles, ripped the bed out from underneath me, and threw the mattress on the other side of my bedroom. He grabbed my little alarm clock/ cassette player and smashed it on the floor....this was the only source of music I owned...I freaked out...I loved the music in my life...
"Nooooooo......" I screamed, as I watched the my cassette player bounce and shatter onto the floor!
He then grabbed my shirt and threw me across the room and into my dresser. My body was heavy in pain...he grabbed my shirt again and jerked me towards him...and yelled, "Why don't you get up like everyone else in this house? What is wrong with you? Why are you so bad? Why can't you just listen?"
I mustered up the courage, "Why don't you pick on someone your own size?"
He took my hair in his hand and banged my head off my dresser...while saying...."Why can't you listen to me?"
I replied, "Why don't you care? What the fuck is wrong with you? Is this what your father did to your sister?"
I felt my head slam against my dresser...over and over and over again....I couldn't cry...instead I began to laugh....
My uncle threw my body to the ground and stormed out. I went over to my door and closed it...I felt no pain physically...but I could hear voices in my head screaming! I wanted it stop...I wanted my mental anguish to go away...I couldn't deal with all of the abuse and the pain, I suffered.
I grabbed my prescription on my dresser...popped open the bottle and threw the lid on the ground. I then knelt on my recliner and began to laugh violently...I shook the bottle of pills down my throat!!!!
I wanted to die! I wanted everything to end...I wanted the world to disappear and feel nothing....I wanted the voices in my head to stop screaming....
I picked up my mattress and put it back under my canopy bed, laid down and fell back asleep. I awoke to my mother..."What are you doing still sleeping? Get up!" She said in a sarcastic, pissy, snotty tone.
I began laughing violently..."I don't care...go away..."
"Go away? You've got school and your ride has left! Get up now..before you get expelled from school."
I chuckled at her voice, and closed my eyes....
All of the sudden I heard a deep voice within me say, "Do you want to commit suicide and burn in hell forever?"
I got up and yelled to my mother downstairs, "Mom I've got something I have to tell you...I need you help now. I've done something bad...."
My mother came up and I pointed to the bottle. She opened the bottle and realized most of the prescription, which she just got was almost gone. "Where did all these pills go...?"
I smirked and said, "I ate them...I'm sorry Mom. I wanted to die, but don't anymore..."
My mother got on the phone and called poison control. She came running back up the stairs frantically, and told me to get dressed because I have to go to the hospital.
Before I arrived at the hospital my mom told me to tell the doctors, I accidentally took too many pills because the pain was too bad because she said they could lock me up in the mental ward!
The doctors forced me to drink a cup off charcoal, which made me sick...I threw up.
Shortly thereafter, a psychiatrist came in and questioned me. I stuck to the story my mom told me...I was scared, felt stupid, and no longer wanted to die for the time being.
The hospital released me....
My mother drove me home...bitching and complaining...
At that point I remembered, why I felt like dying....
This story is based on true events, names of people and places have been changed to protect the people and places involved.
Friday, July 6, 2012
The Beauty in Tragedy
When I was 16, I moved out of my parent's house because of the abuse I suffered. I moved in with my boyfriend, who became my husband when I was 18. I got married to appease my father because of our family heritage and our religious views. Shortly after I was married, I had my son, James. I considered giving him up for adoption because I felt like a child myself.
A year later, I fell out of a moving car (as I stated in an earlier post). I believe this was to prepare me for the pain I would endure in later years.
Shortly thereafter, I had my daughter Veronica, and once I again I thought of adoption. My husband wouldn't let me consider that option. He stated at the time, "You can't put her up for adoption, I won't allow that." I was forced once again to take care of another child, and I had a premonition my husband wouldn't be there in the future, helping me raise these children. You may ask, why was having these children so young important? I believe that now, I may be sterile from the stem cell transplant. Besides, even if I was to get pregnant now, it could initiate a relapse with the MS. I couldn't go back to that disease and I am happy to have my children!
I continued on with college and had to alter my degree course. Before I became pregnant, I wanted to go to college to be a psychiatrist. However, I knew that wouldn't be possible after the birth of my son. I changed my degree to psychology because I figured I would have less collegiate years. However, I still continued with my English degree as a second major. I never could give up my passion for writing, as you can see.
Shortly thereafter, I encountered blindness (as I stated in a prior post) and was diagnosed with multiple sclerosis. After being diagnosed, I had to give up my business, my house, my money and learn to live a humble life. This prepared me, for the artist life I live now.
I was home more often after my diagnosis and I had the time to pay attention to what my husband was doing. I depended on him at this point to run my business because I was no longer able to. It was December, I was 22, my Christmas kiosk was in Barre, Vermont, and my husband was there so I could be home resting. However, I had a problem, the kiosk wasn't making any money as it did in prior years. I decided to drive out there, although I could barely walk, and see what the problem was. I learned Jimmy, (my husband), was cheating on me with several girls and the money was spent on wining and dining them! I couldn't believe it!!! When I needed him most....he was stabbing me, our children, our home in the back! Several months later, I filed for a divorce.
Not only did I lose wealth, but I got a divorce! How could a divorce be good? I know that if I never got sick, I would have never slowed my life down and could of never realized the animal I married. I was forced to evaluate my marriage and realize of its ill effects, on my children and I. I was too busy prior to my illness, to slow down and see the creep I married.
I felt alone, scared and isolated...and that's when I started dating a man, who date raped me! I still scream...and shudder inside at the very thought of this! It made me feel dirty, used, cheap, disgusting...and I wanted to crawl into a hole and die!!!
I'm sure you must be wondering what I could of learned from this? I gained strength....and I needed every ounce to annihilate my disease alone...and become as independent as I needed to be and face what lied ahead!
Then of course..there was Jarrett...my fiance whom died...in my home...the morning after Thanksgiving....
Although he still brings tears to my eyes....I learned from Jarrett the greatest lesson...He told me, "Never give your children up! You may not know it now, but they give you strength! If you lose them...you will regret it for the rest of your life!"
He told me this when my disease had taken a turn for the worse and I was considering of giving my children away. If I hadn't met him...I may have lost my children...whom are my heart...and my courage to have the stem cell transplant....
A few years later I had my stem cell transplant. This was the hardest thing I ever had to do! Not only did I spend 22 days as an inpatient by myself in Chicago, but I had to go through months of rigorous testing...to be admitted. If I wasn't prepared by every tragedy I was faced with prior to my stem cell transplant, I know I wouldn't have had the strength, courage, determination or will power to do it.
Even after my stem cell transplant, I still faced yet another mountain before me...trigeminal neuralgia. Trigeminal neuralgia is nicknamed, "The suicide pain." The medical committee considers it to be the most painful conditions in the world. I remember seeing countless doctors...from neurologists to pain management doctors....no one could help me. I spent as much time as I could withstand, reading about my condition and the options available to treat it. My option was simple...brain surgery. I read of all the risks associated with having the an operation preformed on my brain, but I didn't care. The pain was unbearable...and I came to understand its nickname because the thought crossed my mind. I remember seeing the neurosurgeons at Albany Medical Hospital and asking them to preform the surgery, which required drilling a hole into my head! The doctors refused because they were frightened by the risks associated with the surgery. I needed relief from the pain...which literally felt like a sledge hammer hit me in the left side of my face! I'm not exaggerating...the pain was truly that bad....I thought, the suffering and pain would never end.
I begged God to have mercy and to help me find a way...That's when I had read up on Gamma Knife. This surgery would have to be preformed by two neurosurgeons and a mathematician. I went to Syracuse, the nearest place which offered this treatment.
I had the Gamma Knife...and it worked!!!...I am pain free!!! Yay!!!
I decided to join my local YMCA and exercise my legs each day I could use them...and live life to the fullest. To enjoy each moment...every breath of air...every second of every day...to notice every minuscule thing about everything..the way light looks when the sun hits a leaf...the gradation of shadows..the rainbow of colors in every element of everything...the reactions in every facial expression...I see, hear, taste, and touch everyday of life to the fullest! I am grateful of tragedy I endured because it has made me a stronger, wiser, loving, grateful, unique, creative and mischievous.
I know how hard life can be! That just when you think things will be okay...they're not. When you are facing yet another problem or task to deal with...you need someone most, but they aren't there for you.
Take heart, find the courage within yourself...To defeat everyday... And do everything humanly possible to help yourself.
Don't look to others...Look within yourself! For its in your weakest darkest moment of your life you will find the brightest light of hope.
All you have to do is try...and never give up...because once you stop trying..you have failed.
I am living proof, of light, in the darkness...
Thursday, July 5, 2012
Going to Chicago - Feeling Dead Already
I remember laying in the bed in Chicago, at Northwestern Hospital, for 22 days, when I got my stem cell transplant. The 22 days were long, exhausting, painful and heart wrenching. I felt as thought I was being torn from the inside out.
However, before I began this 22 day course at the hospital, I had to visit numerous doctors and receive medical testing, to see if I could be accepted into this clinical trial. The trial had many parameters I had to meet. The parameter I was scared of not meeting, was whether I was considered relapsing remitting MS. My disease was so bad at this point, I was admitted to the hospital every 2-6 weeks! I couldn't walk at times and I was in agony with pain. My neurologist was beginning to think I was entering the next phase of the disease, secondary relapsing remitting. After each relapse I was left with residual symptoms. For example, after one of my relapses in which I couldn't walk, the residual symptom was my right leg dragging behind me. The doctors were pressuring me to use a cane at all times, but I was so embarrassed every time I did. People would stare at me, and I felt so stupid, embarrassed and distraught because it was though I was screaming, I'm handicap! I was only 28 years old..
I had to meet the neurologist at Northwestern Hospital and receive an MRI to evaluate the stage of disease. My disability was obviously growing worse, and I knew entering the clinical trial could be a problem!
I was frightened, I needed this treatment. All of the other multiple sclerosis treatment options had failed. I tried Avonex, Betaseron and Copaxone, but never tried Tysarbi. Tysarbi had recently become available as a new drug therapy for MS. After researching this drug, I realized how bad it could be for me because when you stop taking the drug, your MS could become 3 times worse. I couldn't imagine my disease becoming that much worse! The other problem was I couldn't receive Tysarbi when I was receiving corticosteroids and I was prescribed steroids every time I was admitted to the hospital. Obviously this was not an option for me.
I discussed my treatment options with my neurologist, Dr. Lava. He understood my concerns and fears of trying Tysarbi and advised that I may want to consider my last treatment option...chemotherapy. I was scared of chemo because I could only receive it for up to 5 years, before I couldn't use it anymore because it quickly damages the heart. So as you can see, my options were slim, either I received the stem cell transplant or I got chemo. Both options had serious side effects, which included death, and they both meant I was to use chemotherapy. However the stem cell transplant offered hope to my disease. I thought if the stem cell transplant didn't stop the disease, at least it could slow it down.
After all, I had two beautiful children whom have never really had the chance to do anything with me. I couldn't play ball with them, or draw, or take them to an amusement park. All I could really do was lay down, sleep and talk with them,...but that's not what a mother is. I was suppose to be there for them and help them grow...and I sure as heck couldn't do that from a sofa!
My children needed me, and I needed them...
I knew I could die from the stem cell transplant, but I felt like I was dead already!
I limped into the neurologist's office in Chicago....
Scared....frightened....but determined....I needed this...my kids need me....God help me...
I knew this was my last hope!
Wednesday, July 4, 2012
Going Blind - The MRI and The Official Diagnosis
When I got there I had to fill out paperwork, which was rather difficult because I had to move my head left to right an order to read it and fill it out...I couldn't see the whole page right in front of me! I began to realize the importance of two healthy eyes rather quickly.
I was brought into a room with a large wall with a cylindrical hole tunneled in it. The technician pushed a button and a wooden slab, which was the size of a bed, slid out of the tunnel. I lied down on the cold, hard bed and placed my head on an a small piece of foam. The technician then placed a small white cage over the lower half of my face and pushed down...I heard a loud pop, as it locked into place.
"Your not claustrophobic...right?" She said nervously.
"I don't think so," I replied uneasily.
"Well, I have to put one more piece over your face. Let me know, if your not okay?"
Another cage was place over the upper half of my face...she slid it down and I heard another pop. I began to get very nervous. I felt like I was in jail or worse yet, like I was Hannibal Lecter.
"Please lie very still and try not to move."
I heard the door close and felt the bed sliding into the tunnel. I couldn't see what was happening around me. I felt cold, alone and scared.
The MRI lasted 45 minutes and I couldn't close my eyes and rest because I could hear a loud knocking coming from the walls around me. I thought it would never end.
Afterwards, I went home and did nothing, but worry. My husband Jimmy, which wasn't much of a husband, was running my gift shop in Lake George. I couldn't trust him, not to do anything. He lied to me so frequently that I couldn't believe anything he said. I didn't know if he was at the store...or what was going on. I felt helpless and foolish. I married a man who only used me for what I could give him. He never cared to work, to help me...and he didn't care what was happening to me!
The next morning, I remember the phone call that change my life forever...my general practitioner was calling at 7:45...I knew him calling this early wasn't good news.
"Well Rosary, it appears you have multiple sclerosis," he said nonchalantly. "I scheduled you an appointment with the neurologist Dr. Sole at 11am today. Let me patch you over to the receptionist and she will give you the address."
I thought...What was multiple sclerosis? I've heard of people having that, but didn't know what it was. What's a neurologist? What does a neurologist do? What's fucking wrong with me? I didn't understand.
I didn't know at the time, that this diagnosis was only the beginning. That multiple sclerosis would turn my whole world upside down!
Read the beginning of this story here.
Read the previous installment of this story here.
Tuesday, July 3, 2012
Going Blind - The Opthamologist Visit
My mother bitched and moaned about helping me, while she drove me to my appointment. She decided to wait outside with my kids. I went in the office and began the new patient forms, which always seem to be endless and pointless. Most of the questions asked don't pertain to the problem your having and ask ridiculous amounts of information about your extended family's history. Jeepers...do they really read all of this?
I was called in shortly and handed my paperwork to the assistant who led me into a room with an eye machine. She had me place my chin on one strap, and put my forhead against another strap. She told me to look straight ahead and keep my eyes open.. I could see a bright red light coming towards my eye, which seemed to do nothing. However, it touched my eye, ever so gently to check the pressure in my eyes. Afterwards, she had me lean my head back and placed drops in my eyes. She told me I would have trouble seeing in a few minutes and lead me back into the patient waiting area.
It was 15 minutes or so, when another assistant came and got me. This time I was lead down the hallway and into the room at the end. Dr. Picano came in and introduced himself, sat down to look over my paperwork and carried on small talk with me. We talked about nonsense, such as, we were both Italian, how long he's been practicing, what I do for work..etc. Afterwards he began an eye exam which lasted over an hour!
I was then asked to preform another another eye test! What the heck? Was I ever leaving?
I went back into the first room, but this time seated at a machine that kind of resembled an arcade game. I was asked to keep my head still, look straight ahead into these goggle looking things attached to this machine. I was then told to press this button I would hold, everytime I saw a red light. The test took about 15 minutes and seemed mildly entertaining. I was asked again, to wait for the doctor in the waiting room! WTF?
I was called about 20 minutes later by Dr. Picano. He said we needed to discuss the results. I thought..Hmm...ok...sounds good...I need to go to work and finish moving!
Dr. Picano explained calmly,"The results showed there is nothing technically wrong with your eye. Your eye is working fine. Rather, there appears to be a problem with optic nerve, which is part of your brain. It seems your brain isn't seeing the images which enter the eye."
"I don't understand? What's wrong with my vision?" I said frustrated and scared.
He took a deep breath,"Well in my opinion...I believe there's something wrong with your central nervous system. We need to do a brain MRI, as soon as possible in order to figure out what's wrong."
"Well, when do I get the MRI?"
"I've already called and they said the earliest appointment they could give you is on Monday morning because its almost 3'oclock and its Friday and they are closed for the weekend. I advise you to go home and rest. Don't perform any strenuous activities, until the results from the MRI come back."
I didn't say anything...I was confused...A problem with my central nervous system? What the heck is that? What did he mean? Why didn't I ask any further questions? Why am I so scared? What was happening to me? I want to be able to see!!!! Why can't they just fix this problem?! I held my head down in sorrow and disbelief...I was fighting back the tears...I needed to figure out who was going to run my store...and how I was going to finish moving...I became frightened at the thought of finding help...Who could help me?
I took the referral form from the woman at the desk...who kindly asked, "Are you okay?"
Just then the tears began to flow like a stream from my eyes....I sniffed my nose, politely tried to smile, and replied, "I'll be fine." I knew I wasn't fine...I was overwhelmed by fear, confused, sad and helpless...What was I going to do?
Read the beginning of this story here.
Read the next installment of this story here.
Sunday, July 1, 2012
Life and Death Experiences
Everything is well thought out, and if there isn't a preconceived thought...there's always a preconceived emotion. The preconceived emotion, is what I'm always harboring within me. They are the emotions I haven't painted or sculpted out yet in my mind. The emotion becomes more complex when I combine feelings of past, present or future together. These emotions have made me what I am today.
My past experiences are what lights my soul and sets it afire. To have been so close to death so many times in my life has made me more appreciative of not only the good in the day...but the negative, dark, crazy times we experience. I've always enjoyed the darker places because of the light I find within them. For when we feel the light in the darkness, its always more rewarding and beautiful, then any other time. I think that's why I crave mischeif...I'm always looking for the unexpected spontaneous things which can occur. However, after life and death experiences we realize how easy it is to die...even if not physically, but mentally we can die. I use to deal with my disease and the prison it built around how I lived because I stayed in all the time, either of pain, paraletic limbs, facial pain (trigeminal neuralgia) and every other medical experience I suffered. However, now today...I live! I'm free of disease and pain, and I feel this is what allows me to appreciate moment of everyday.
Then of course there's the loss of a loved one....and anyone who has experienced the loss of someone whom was very close, and whom you loved dearly... knows how terribly this effects you. My fiance died in my house, on my sofa, eating a fentanyl patch. The transedermal patch was never meant for ingestion...but what does the ass do when I went to sleep that night? He placed the synthetic narcotic patch into his mouth!!!!!!!!!!!!!
I remember the morning this happened....
I awoke the morning after Thanksgiving to my two children telling me, "Mommy get up...Jarrett isn't waking up..."
"What?!" I sat up quickly...
I hear Veronica's voice tremble..."Mom there's something wrong he won't get up... "
I jumped out of bed...and ran down my short hallway..and in those 2 seconds before I saw him..I could feel my heart punding and bursting in my chest....I felt a rush of thoughts run through my mind....I knew something happened with the drug he was fooling around with. I remember the night before I fell asleep arguing with him about the fentanyl he was taking. I was begging him to stop...telling him his voice was slurring and he wasn't even aware of it. I exclaimed, "He was fucking with the devil."
I turned the corner at the end of the hallway and saw him....slumped into the sofa...his head tilted uncomfortably to the side...his lips were blue and his palor bluish grey ...I knew he was dead...
AHHHHHHHHHHHH!!!!
I examined him quickly...searching for a pulse in his neck, placing my head against his chest looking for a heartbeat, pulling his eyelids open to see his eyes were rolled up into his head. I began to lay his head down onto the sofa becausse I needed to preform CPR...I attempted to postition him, but his body felt so heavy...so lifeless I could barely move him. So I pushed his body onto the ground....opened his mouth and saw a piece of plastic in it...I put my finger into a "C" position and cleared his airway...out came a piece of plastic...the fentanol patch!!! I grabbed my phone, and called 911.
"Operator I need an ambulance now...My boyfriend he's experiencing a drug overdose."
"Mam, you need to calm down..."
"I need an ambulance now! I live at 508 London Square........NY...I need help now!"
"Mam you need to calm.."
"Calm down? No I do not need to calm down...My boyfriend is dead!!! I need to preform CPR!!! You have my address right?!"
"Yes mam we do...Someone is on the way now."
"Go downstairs and wait for the policeman..."I screamed at my kids...
I dropped the phone...and began breathing into Jarrett...trying to get his chest to rise and fill with air...instead I felt and heard liquid rattling ...and his chest didn't rise and fall...I began to get frantic...and become more scared...
I knew he was dead..my heart sank into my stomach and I began to shake....I climbed on top of his chest and began pushing with my palms..counting 1..2...3...4......10. Then I returned to his side to preform further mouth to mouth...I felt not one beat from his heart and his body felt cold...lifeless...dead....
A state trooper showed up within minutes and came in...He knelt beside me and told me to move...He pushed on his chest so hard...that after a few times, vomit and blood began to come out of his ears and mouth....I began freaking....
"Mam, you need to give him mouth to mouth..."
"I put my mouth over his and began to blow, but I wasn't getting past the vomit, blood and mucus that now filled his mouth....So I opened his mouth and cleared out his passageways and began again..smelling and tasting his blood and his vomit in my mouth...I could feel my blood curdle inside....How I wanted to cry....scream...and let out the emotion that was consuming my body...I was looking at the man I loved...dead...I could barely believe what was happening to me...
What was happening? was I going to awake from this nightmare? Oh, God please don't let this be true..please don't let this be true..."
The paramedics arrived after a few minutes....they immediatly took his O2 level and his blood pressure...they said he must have been dead for hours.
"Aren't you going to shock and revive him!?"
"No, he's dead...If we did that he might come back brain dead."
I started screaming, "No! NO! NOOOO!!!!
Bring him baaaack!!!!"
The state trooper next to me..grabbed me, lifted me up and forced me into my bedroom....Where I began to scream...and cry...
I didn't stop crying day and night for 9 months, unless I exhausted myself into sleep......